Protocol for a realist evaluation of Recovery College dementia courses: understanding coproduction through ethnography

Introduction Support following a dementia diagnosis in the UK is variable. Attending a Recovery College course with and for people with dementia, their supporters and healthcare professionals (staff), may enable people to explore and enact ways to live well with dementia. Recovery Colleges are established within mental health services worldwide, offering peer-supported short courses coproduced in partnership between staff and people with lived experience of mental illness. The concept of recovery is challenging in dementia narratives, with little evidence of how the Recovery College model could work as a method of postdiagnostic dementia support. Methods and analysis Using a realist evaluation approach, this research will examine and define what works, for whom, in what circumstances and why, in Recovery College dementia courses. The ethnographic study will recruit five case studies from National Health Service Mental Health Trusts across England. Sampling will seek diversity in new or long-standing courses, delivery methods and demographics of population served. Participant observations will examine course coproduction. Interviews will be undertaken with people with dementia, family and friend supporters and staff involved in coproducing and commissioning the courses, as well as people attending. Documentary materials will be reviewed. Analysis will use a realist logic of analysis to develop a programme theory containing causal explanations for outcomes, in the form of context-mechanism-outcome-configurations, at play in each case. Ethics and dissemination The study received approval from Coventry & Warwickshire Research Ethics Committee (22/WM/0215). Ethical concerns include not privileging any voice, consent for embedded observational fieldwork with people who may experience fluctuating mental capacity and balancing researcher ‘embedded participant’ roles in publicly accessible learning events. Drawing on the realist programme theory, two stakeholder groups, one people living with dementia and one staff will work with researchers to coproduce resources to support coproducing Recovery College dementia courses aligned with postdiagnostic services.

A typical adult mental health Recovery College offers courses on mental health and recovery, designed to increase attendees' knowledge, skills and confidence in self-management of their own mental health and wellbeing.Of note, what 'wellbeing' means for people with dementia may be very different, but has been defined as emotional (positive states), social (connections and belonging) and psychological (positive sense of self, going beyond and agency and purpose) with an overarching theme of 'valuing life', which differs to studies evaluating life satisfaction (Clarke et al., 2020).Courses range from one-off sessions to several sessions spread over a set number of weeks.All courses are co-produced and co-delivered (i.e.co-taught) by peer tutorsthat is, people with lived/expert experience -and mental health staff, who also enrol on courses as attendees.Peer tutors prepare for their role through having training to teach and support, and receive supervision to ensure any sensitive issues can be supported effectively.A theory of change model for Recovery Colleges has been co-developed within adult mental health contexts that identifies four mechanisms of change (Toney et al., 2018) empowering environment -opportunities for choices; shifting balance of power; enabling different relationships and connecting with peers; and facilitating personal growth through shared learning and strength-building.Outcomes were changes in the attendee including improved wellbeing, reinforced by life changes they could observe.This model is highly applicable to enabling desired outcomes for post-diagnostic support in dementia.
A 'recovery-focused', peer-support, adult learning approach is adopted and embedded within a strategic care delivery approach in mental health Trusts, to improve care outcomes beyond a narrow focus on symptom reduction, to help people rebuild meaningful, satisfying lives, despite limitations caused by mental health difficulties (Perkins et al., 2018).This approach is already flourishing in adult mental health services, encouraged since 2011 by the Department of Health commissioned 'Implementing Recovery through Organisational Change' (ImROC) collaborative https://imroc.org/.Working with mental health Trusts, ImROC founded Recovery Colleges which have rapidly become a core part of recovery-focused mental health services.As of 2017, there were 85 Recovery Colleges in the UK (77 in England, 2 in Scotland, 5 in Northern Ireland and 1 in Wales; Anfossi, 2017).
BMJ Publishing Group Limited (BMJ) disclaims all liability and responsibility arising from any reliance Supplemental material placed on this supplemental material which has been supplied by the author(s) BMJ Open doi: 10.1136/bmjopen-2023-078248 :e078248.13 2023; BMJ Open , et al.

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Recovery Colleges further have five key linked conceptual processes -the CHIME recovery frameworkrobustly developed to underpin the term 'recovery' in this context: connecting with others, inspiring hope, maintaining a positive identity, finding meaning in life outside of symptoms and empowering control over life and a focus on strengths (Leamy et al., 2011).
The CHIME Recovery framework, as operationalised through Recovery Colleges, has clearly relevant links with the NICE-recommended person-centred care framework for dementia (Leamy et al., 2011;Brooker, 2007), the Royal College of Psychiatrists Memory Services National Accreditation Programme (MSNAP; Copland et al., 2018) and the National Dementia Strategy objective to develop peer support and learning networks (Department of Health, 2009).Key domains for person-centred care are valuing people living with dementia and those (both informal family and friends and health and social care staff) who care for them; providing care that is individualised; understanding and acting from the perspectives of people living with dementia (which can reinforce connections, meanings and identities); and creating positive social-psychological environments (which can build hope and empowerment; Brooker, 2007).For dementia care to be person-centred, all these elements are needed and need to work together.Both frameworks require mental health services to continuously improve, and to evidence progress towards more meaningful care within each of these domains (Brooker, 2007;Leamy ey al., 2011,) yet person-centred principles are still poorly and inconsistently translated into practice.Applying these frameworks in memory post-diagnostic support services is important for keeping a whole person focus so as to value the identity, perspectives, strengths and needs of people living with dementia, and so to enable staff to share with patients more effectively care planning alongside understandings of personal recovery in adjusting to dementia.
Five recovery processes giving the acronym CHIME Connectedness with others; inspiring Hope and optimism about the future; maintaining a positive Identity; finding Meaning in life outside of symptoms; and Empowerment with control over life and a focus on strengths.(Leamy et al., 2011)